Face of a Chronic Illness

I'd like to share this Facebook post from my daughter...for anyone who has, or cares for someone with a chronic illness, you may relate.

This is what someone looks like living life with a chronic illness. Chronic illnesses are conditions or diseases that can be neither prevented, nor generally ever cured. Many chronic illnesses are invisible disabilities, meaning they are conditions that create significant challenges in daily every day life, but are not easily apparent and sometimes not even seen to anyone on the outside.

My parents told me when I was two years old I fell off the bed. They felt a bump on my leg afterwards, and brought me to the doctor. It was then when I was diagnosed with Multiple Heredity Exostoses. MHE is a rare, chronic, painful disease that is characterized by benign bone tumors. It’s generally hereditary, as the name states, however in my case, it is an even rarer mutation as I’m the first generation to have it. I can’t remember a time I HAVEN’T BEEN in pain. You can’t tell by this picture, as this was taken after I had 22 tumors removed from my body, 21 from my legs and 1 from my hand, but it’s a deforming condition as well. Growing up, I used to have golf balls sticking out of my knees. I was an extremely fragile child: if I were hit hard enough (as in falling or running into the metal rods on the play ground) I’d get another tumor on the impact site. If I tried to run in gym or on the playground, muscles, tendons, and nerves would get stuck on the tumors in my knees. My legs would lock until the tissue was unstuck. I would have to basically pull the muscle off of it myself. I was so fragile that the other kids were scared of me. I remember when I told my “best friend” in fourth grade that the reason I couldn’t take PE was because I had tumors, she screamed “Ew get your cancer away from me!”, in front of the whole class. I was basically ostracized during my entire school years.

I could never understand why people are so hard on people with chronic illnesses, but then I thought maybe it’s because they simply just don’t know someone is suffering in silence. The best compliment someone can give me has nothing to do with my appearance, but that they didn’t know I had anything wrong with me. People who go through life living with a chronic illness have a double life. They have the life they want people to see, the life that’s going through the motions of daily normal life—going to work, having a social life, a façade really. The real life is the one they don’t want people to know—the struggle to get out of bed, the amount of sheer determination it takes to go through a full day of work. The constant inner pep talks, inner monologues about different motivations to keep going. The guilt of cancelling plans last minute because your body can’t handle anymore, and then the shame of just stopping making plans overall because you know you’ll have to cancel anyway, your body just can’t handle anything more. The constant worry that you’re keeping your chin up high and your voice strong and clear when you just get back bad test results. Those living with chronic conditions have become so accustomed to living the double life that it appears to the world as one, leading to the ignorance aforementioned: they just can’t tell. 

For me personally, the fact that I can go to work is a blessing and nothing I would take for granted. I have over 100 tumors through out my body; I do not have to work a day in my life. I could collect a check and never have to get off the couch to earn it. I don’t have to work, but I want to. That’s why for me, the most hurtful thing someone can do is imply that I’m lazy. The things “normal” people see as a chore, I—along with many others going through life with a chronic illness—see as a privilege. I’m on deck for my fourth surgery and the most upsetting part about that isn’t the amount of work that needs to be done, reconstructive, and tumor removal. It’s the post op recovery that upsets me most, because I will be forced to stay home and miss work.

I only write this to offer perspective. I don’t write this for your sympathy and pity. My ultimate goal in life is to be “important enough” that people will care. Don’t get me wrong, I know people care, but I’d like to be the person a little girl with bumps all over her body can look to and know she can do what ever she puts her mind to, no matter what the bullies and doctors say. I’d like to be the person a worried mother can look to and know MHE, and ANY disabling illness, is not a death sentence, and will not stop their child from living a happy and fulfilled life. I’d like to be the inspiration that I never had, and that can only be achieved by me opening up and telling my story.

Marie

2016 - The Year of Declutter

I declare 2016 the year of declutter!

My muse has not returned so I got to thinking that maybe I'm clogged up because I have too much clutter in my life. Perhaps if I start to eliminate some of it there will be an opening in my surroundings, especially my spirit and mind, whereby creativity can once again enter it.

I have too much stuff. I have too many projects started. I have too many "one day I'm gonna" declarations. I have too little completions.

The first thing I need to declutter is my body. I've gotten to that tipping point where I know I've let myself go way too far. My husband doesn't care and I swear he wants me to stay fat and I'm not kidding. I'm sick of it and I feel sick. I know I must be at the very least pre-diabetic especially after this last month of consuming every goodie I wanted. I feel like a sugary elf who can't fit into the tree house. No more.

First step is to jump back on the NutriSystem train to give me the jump start I need. Last time it worked and I did lose seven pounds in one week. I've told my husband he's on his own this week as I will not deviate from the box of chemical fiber meals sitting on the table. That means no alcohol or wine either so he better not push that glass at me saying, "C'mon, one's not going to hurt you." Yes, yes it will because I don't know how to stop at one...one to me is a whole bottle. So, no! I've also bought a Zumba DVD set to add to my routine. Riding the stationary bike while watching Netflix doesn't work any more. My body is used to it. I could probably fall asleep while pedaling. My daughter took a look at the Zumba box and remarked, "You can't move that fast." Maybe not in a class full of slim women, but yes, yes I can in the privacy of my own home. Once I get my body fit I hope my mind will also be more fit. One step at a time.

Next up is to declutter my office. I still have all my walls plastered with research for a novel I haven't even seriously begun to write. I got so caught up in the details and research that I lost my way in the writing of it. It became too overwhelming. I jumped to a couple of other stories that I wanted to get out and was making good progress until I began researching those subjects and found myself once again a prisoner in the library. The problem is I love to read and become so easily engrossed. Add to the mix a couple of current books I "must read" and the next thing I know I have a full stack on my nightstand as well as a full kindle. Truth be told, I am at my happiest with a nose in a book, so it's not a bad thing, but if I want to be a serious writer I cannot keep reading other folk's works. For some reason the muse is with me when I'm in New York City, but here in Roanoke, she's left the valley. I'm hoping if I work on my office and declutter my surroundings from not just research on the walls, but paperwork everywhere, my mind will feel less cluttered. Right now I'm up to my ears in end of year shop shit, so it's not going to happen right away. One step at a time.

Now for the stuff decluttering. I need to do something with the thousands of books, magazines and VHS tapes that I had transported down here from my dad. I had catalogued a couple of thousand of them, but when I made the chart I made it using MS Works and not Word. Unfortunately, my lap top that contained all the info died and I have been unable to transfer all the work I did via a flash drive to any other computer we have in the house as none of them have MS Works. When I fire up my old tower to do the shop shit, I'm hoping I have Works on there so I could at least print out all the info. Even if I can, I'm still at a loss of the best way to go about selling the materials. Should I start a website? Should I use eBay? Should I use Amazon? I've never sold anything on line and I have no idea how to even begin. I feel like the tons of books are hovering over my head and will collapse upon me one day if I don't do anything with them. All I know is I have to do something as the shop has everything there and my husband needs room for his creations which brings me to the next decluttering I need to do...find a way to help my husband sell his creations.

My husband is not only a gifted mechanic but he also has magic hands with wood, granite, or anything else you put in front of him. He creates beautiful works and has been bugging me to come up with a way to self his stuff on-line. Although he did very well around Christmas with folks coming to the shop and buying his creations for last minute gifts, he could do much better all across the country. Again, I just don't know how to begin to market and sell it for him. Should I start a website? Should I use eBay? Should I use Amazon? Should I use Etsy? I just don't know where to begin, but I really need to as we need to think about adding a second income into the mix as his mechanic days will eventually be drawing to an end. There are no old mechanics. And if we're going to depend on my royalties, we'll certainly starve.

I also have tons of "memory" articles cluttering up the basement. There are knick-knacks, clothing, just tons of crap from my parent's house which I have not even unwrapped from newspaper, or have stuck in drawers, boxes, etc. What do I do with all that stuff? I have always felt guilty just thinking about getting rid of it, but what good is it doing me? I'm getting to the point where I need to let some of it go. I think I finally realized it this Christmas when I had a couple of pieces that were my mom's shatter during the holidays. When they broke I was upset for about a minute, especially since this year was the first year I unwrapped them and said, "What am I waiting for? A special day? Today is a special day!" So I took them out and actually used them. Unfortunately, the folding table wasn't secure and one leg buckled under (that's the story we're going with) causing everything on it to tumble to the ground. The only things that broke were my mom's. Same thing happened when a plate flew out of the dish drain on the counter. Same thing happened when the Christmas resting spoon came out of the dishwasher broken. By that time I was like, "Oh well, another one bites the dust." So I got to thinking if the articles I liked broke and I was able to flick the feelings away so easily why am I holding onto all the figurines and stuff which I don't even like? Perhaps it's time to let them go as well. Maybe I can sell some of them too. Once again, how do I go about it? On-line? Or, maybe I should look into what the deal is with renting a space from a local flea market or consignment shop. Something to consider.

All I know is that my life needs decluttering, and just because you get rid of an article that means/meant something to me/someone it doesn't mean I'm getting rid of the memory and memories take up less space...